Misdiagnosis And Medications

I’ve taken a break from everything lately. I’ve been dealing with someone pretending to be “Steven Tyler” who somehow got my cell phone number and was using Google Hangouts to repeatedly send me messages. I didn’t even know what Google Hangouts was. Then he started texting my actual phone after I blocked him on the Google App. It took weeks to get it to stop. I still don’t understand what the end game was. He wasn’t asking for money or anything like that it was just creepy. I have to say it triggered a lot for me. Unfortunately this wasn’t the first time. Anytime an actual verified celebrity has liked a comment I’ve made or followed me this has happened. So I will try not to make any intelligent comments that musicians find interesting. Thank you very much stalkers.

MISDIAGNOSIS

I’ve had my fair share of doctors who have misdiagnosed an illness I have. I also had many doctors miss a diagnosis of Bipolar Disorder for 20 years. What makes me angry is my Dad. A few years ago he was having severe headaches and went to the ER. The doctor did an X-ray of his head and told him he had Temporal Arteritis. He was put on a high dose of Prednisone for a year. It was hard to get him off it. He became a different person. He was aggressive, moody, confused, unsteady on his feet, and looked bloated. It was the aggression I had a hard time with.

The only way to diagnose Temporal Arteritis is to have a biopsy, you can not tell by looking at an X-ray. My Dad refuses to believe anything I tell him. When his headaches started again recently he called his GP and asked him for Prednisone. The GP gave it to him. I’ve been staying in my room ever since.

His blood pressure has been dangerously high after dialysis. 208/140 high. They can’t stop his bleeding when they take out the needles. This is all from the Prednisone. Which by the way actually says to tell your Doctor if you have: Kidney Disease, Heart Disease, High Blood Pressure, Cataracts, Stomach Ulcers, a History of Stomach Bleeding, or Depression.

He has all of these! He has mesh in his stomach for an Aortic Aneurysm that’s already been repaired once!

Are these people stupid? I know the Hippocratic Oath isn’t legally binding but do they care if they kill someone?

The other day the dialysis center wouldn’t give him his treatment. They said his fistula was clogged. A Doctor came over and asked what was wrong. He looked down and noticed there was knot in the tube. He fixed it and went about his business. They were going to send my Dad for surgery he didn’t need because there was a kink in the tube that no one noticed!! And the Head Doctor acted like it was no big deal.

I read a study today that said a patient has 42% higher chance of a misdiagnosis if the Doctor thinks they’re “difficult” or “needy”.

They suggested patients be more positive when meeting with Doctors for the first time so this doesn’t happen.

Hey, sorry if I ask questions or cry because I’ve already been to 5 other Doctors who couldn’t/wouldn’t help me but let me make this more comfortable for you while I’m literally dying.

Here’s and idea, DO YOUR JOB! No one forced you to go to medical school you chose to go. If you chose to go only for the money than you should quit now because times have changed.

One more thing. No Doctor should be prescribing medications or making a diagnosis they are not qualified to make. Dr, Drew isn’t a Psychiatrist so he shouldn’t be making psychiatric diagnoses. A General Practitioner can’t diagnose Conversion Disorder. You need a Team to do that. A Psychiatrist, a Neurologist, and a doctor who specializes in Movement Disorders.

Your Psychiatrist should also have a degree in Psychopharmacology so they know how medications work, which ones work for different disorders and which only make them worse.

Advocate for yourself because no one else will.

WHEN YOUR OWN DOCTOR IS FRUSTRATED WITH YOU WHAT DO YOU DO?

The last time I went to my Psychiatrist in February, he was visibly frustrated with me. It was obvious he was out of options. He threw names of medications at me that “we” could try. The problem is that they were all chemically related to previous medications I’ve tried.

I couldn’t understand how he thought Trintellix would be that much different than Brintellix. There is a difference, there’s a T instead of a B. How is it that I know the components of these medications and he doesn’t? How is it that he still can’t tell me how Viibryd is broken down in the bodies system and if I’m getting the full benefit of it? Is having 1 kidney and an extremely compromised immune system preventing the antidepressant from reaching my brain? How is it that no one knows? This isn’t curing Cancer or figuring out the molecular structure of a foreign matter we recovered from another planet! (If you believe in such things)

Sorry. So, towards the end of our 12 minutes he suggests that if I’m that miserable “Why don’t I try taking myself off my medication to see what happens”. This kind of pisses me off as everything does these days.

I reached a point a few weeks ago where I didn’t care anymore and started to wean myself off of my meds. I then tried to change Primary Care Doctors. That didn’t go well at all.

People who don’t know me and read on a piece of paper my diagnoses tend to assume that I am less than intelligent. This is a poor mistake on their part. If from the beginning you talk to me like I am a child or I can’t hear you than we are going to have a problem. If you don’t listen to what I have to say and dismiss me we are going to have a bigger problem.

Conversion Disorder and Bipolar Disorder can work in mysterious ways. There are times where I will be so frightened I will curl up in the fetal position rocking my body back and forth while crying uncontrollably for hours. Time stops during these episodes. Then there are times where a red veil of rage clouds my eyes. I spew out whatever is in my head and I often don’t remember what I’ve said I usually find myself curled up crying knowing that I was out of control but that’s about it.

I WANT TO BE VERY CLEAR. I HAVE NEVER PHYSICALLY HURT ANYONE DURING THESE EPISODES THEY ARE ONLY EPISODES OF SAYING WHAT’S ON MY MIND WHICH I NEVER DO AND STICKING UP FOR MYSELF WHICH I NEVER DO.

It isn’t easy living like this and I have tried so many Doctors, medications, therapy, ECT, you name it without much relief. Now it’s different because my physical health is being compromised. I can’t travel, I have no energy for anything. All I know is that my Blood Pressure is really low. You think the Primary Care Doctor could’ve started with that? Bloodwork? A urine test? Nope. So plan B is to have my stents changed which the Primary Care Doctor couldn’t understand why I had stents in the first place.

She insisted that I must have had “Kidney Stones”. I said “No, I didn’t have Kidney Stones. Most people with Kidney Stones do not get Bilateral Ureteral Thickening like I have.” She didn’t like my answer. She saw on my chart that I had a Hematologist and asked “Why do you need a Hematologist?” I told her that my White Blood Cell Count was extremely low years ago so I was sent to him and he found a lot of abnormalities that usually go with Celiac Disease and when I went into Kidney Failure they were trying to rule out a specific disease that involves a genetic sequence so he also worked on that. I couldn’t understand why the more I spoke the more she looked like she smelled shit.

If I said Black she came back with White. After 20 minutes of this and my stutter becoming worse and worse I had enough. I remember standing and telling her that this was the end of our appointment. She told me I had to wait to do an Exit interview/paperwork. I said “This is my Exit”. And I walked out. This is what a degree from Harvard and an internship at one of the most prestigious Hospitals has gotten me. The second Doctor to treat me like garbage with the same credentials.

I don’t understand why it’s so hard. This Doctor’s nurse had more empathy and human kindness than anyone I’ve met in a long time. Why is it so hard to find that? Are Doctor’s sick of seeing Mentally Ill patients? Or is it patients that actually have a clue about their own care? I know there are Doctors that dislike patients who go on the Internet and learn about what their illness. But guess what? I’d be dead if I didn’t learn what I could and be my own advocate. No one is going to fight for this “crazy” person’s life except me.

Just some new earrings I made.

My Psychiatrist is About To Be Tested!

I have an appointment with my Psychiatrist on 11/11/15. Things are going to be different this time. I’m going to make a list of everything I need to ask him and everything he needs to do. I’ll try to get my sister to help me. lol If she answers her phone. If the things on my list are not done or addressed than I will find another Doctor.

The problem I’m having is when I look on the Medicare website where you can download your records, I see what he’s putting in my file and what he’s charging Medicare.

Medicare is over charged by 99% of doctors. There are fewer and fewer doctors taking Medicare in my State because they feel they don’t get compensated enough and it’s a pain in the ass. So the one’s that do pad the bill. I’m not going to say anything about that. If I do it will get around to other doctor’s in the system and they will not take me as a patient.

The fact that he copies and pastes every visit I DO have a problem with. This was what almost cost me my Disability. If I hadn’t had a lawyer to point it out to the judge I would’ve lost. I thought he stopped doing it. He hasn’t.

Every visit says the same thing Bipolar II.

This is wrong. I am Bipolar I, I also have Conversion Disorder, General Anxiety, Social Phobia, and someone added Catatonia which I have no idea what that is even about. None of these appear in my file.

So when I go up for review and the board looks at my file all they will see is the incorrect diagnosis of Bipolar II.

I have to figure out a way to explain this without stuttering and getting upset. I don’t want to offend him. He really isn’t a bad Doctor he just hates paperwork and the record keeping part. He’s told me so himself. But lately he’s been off his game as a Doctor also. Asking how I’m doing on a medication that I discontinued 2 visits ago and is on the screen in front of him. Or it should be. Something is different with him. If I get the same feeling on the 11th than it’s time to go.

The problem is where? We all know a good Psychiatrist is hard to find let alone one that takes your insurance.

I wish my Hematologist could be my Psychiatrist and all my other Doctors rolled into one. He’s the only one I like. The only one to encourage me to advocate for myself and learn about what I’m diagnosed with. He also encourages questions. NONE of my other doctors do that. He’s rare. Maybe he’ll adopt me.

The point is make sure your doctor is putting the correct info in your file and explains things to you. If they don’t like you asking questions then there is something wrong and try to find someone else. Good luck we need it.

Being Your Own Advocate!

When it became clear to me and the people around me that I could no longer hold a full time job I applied for Disability. It was a long, degrading process. If I hadn’t had a lawyer that specialized in Bipolar Disorder and Conversion Disorder I never would have gotten it. It was a long drawn out process. I finally had to go before a judge. He wasn’t a pleasant man. When he started to ask me questions and I stuttered and had trouble finding the correct words he said “What? Didn’t you take your meds today?”.  It was at that point I started crying. I could see my father sitting in the corner of the room with his hands in a fist and a look of rage in his eyes. My lawyer at that point spoke up and told him the facts. My lawyer had spoken on the Senate floor about Conversion Disorder and other disorders like it. He knew his stuff. He was disgusted with the judge. There was another problem. My Psychiatrist was just copying the same thing in my record every time I went. So it looked like I had 1 diagnosis and not the actual several that I really had. My lawyer brought this up also. The judge hesitantly gave it to me.

Most people get a review in about 5 years. Not me. I get a review every 2 years or so. Even though my doctor and other doctors have said that I have actually declined and not improved. They say I will continue to either decline or stay where I am. Where I am isn’t great.

I checked my records recently with Medicare. My Psychiatrist is doing it again. Cut and Paste. It has one diagnosis listed. This interferes with Disability. When they look at my records and see the one diagnosis it makes it worse for me. He has admitted to me personally that he hates paperwork. He has complained about the amount of paperwork he has had to do for me.

I started working on the books at the age of 14. I always worked. Starting at 14 it was every summer 7 to 3:30 p.m at the jewelry factory. I didn’t go to the beach or hang out with friends, I worked. At 16 during the school year I managed a Hallmark store at night after school. In the summer it was the factory and the Hallmark store. I then started working for a Video Rental Chain. I worked up to 60 hours a week for 13 years. What I’m saying is I paid into the system. People think you are just looking for a free ride. When I started a new career as a hair stylist and my symptoms became worse I had no choice. Clients have a tendency to back away from you when your hands shake with a pair of scissors in them. I couldn’t work with the public anymore. I was having meltdowns in the closet everyday.

I’ve decided to look into a new doctor. If mine can’t take the time to properly keep an account of my records than why should I go to him? I also noticed that he bills them for an hour of Psychotherapy when I’m only there for 10 minutes.

The point of all this is to check your records or files. Make sure your doctor is being accurate. You deserve that.

Why I’m Beginning To Dislike Doctors

When I first started this journey of finding help I was 17 years old. It took until the age of 37 to get some of the correct diagnoses.

Too many doctors assumed that because I am an Alcoholic that my tremors were being caused by my sobriety. They also assumed my cognitive problems were due to drinking also. A few doctors said the longer I was sober the more my cognitive skills would improve. They didn’t.

I was referred to a Neurologist by my General Practitioner when my tremors first started at 35. He diagnosed me with Essential Tremors. This is a hereditary condition that no one in my family had. He had my file and history. He said one thing that helps is to have a “drink” when they get really bad and you’re in a social setting. I told him I’m a recovering alcoholic. He said “You can’t just have a glass of wine or something?”. I thought for such an incredibly intelligent person he sure was stupid. I didn’t go back to him.

Then I was finally diagnosed with Bipolar Disorder. The problem was none of meds worked the way they were supposed to. So after years of my sister telling me to get tested for Celiac Disease I finally did. I resisted previously because I didn’t have the usual symptoms like she did. I didn’t know it caused malnutrition and malabsorption of meds. I didn’t know it interferes with your cognitive skills and can cause tremors and stuttering. So I had the blood work and biopsy done and both were positive. My immune system was severely compromised. My Psychiatrist sent me to another Neurologist.

This one diagnosed me with Conversion Disorder. I didn’t want to believe him. I spent a great deal of time convincing myself it was the Celiac.

There came a time when I finally had to admit he was right.

My stutter and tremors would get worse under stress or if I was upset. I startled easily. Hearing loud men’s voices would set it off, if I felt threatened it would start, if I had a bad memory, anything that was emotionally stressful or disturbing for me would do it. A second opinion confirmed it.

Now with my kidney failure and biopsies the doctor didn’t tell me everything. I got the report sent to me of the lab work done by the Hematologist and results of the biopsies.

No one said there abnormalities of the organs in my pelvis and the soft tissue of my pelvis. No one mentioned I tested twice for Monoclonal Gammopathy or Lymphocytopenia. Also something listed under Immobility Syndrome. A disorder caused by an infectious process involving the skeletal muscles that causes muscle weakness and pain.

I have had problems with my white blood cell count for the last few years. I was diagnosed with Leukopenia. A lot of this has to do with your bone marrow. The Gammopathy and Lymphocytopenia are linked to Multiple Myeloma. So they have been looking in the wrong place for the cause of my kidney failure. All of these things are linked to kidney problems. The Monoclonal Gammopathy is a specific protein found in certain people that has to be monitored because if it isn’t you get problems like I am having. Good to know. So I will not be getting a second opinion from another Urologist. I’m going back to the Hematologist who I didn’t know had called and wanted to see me. He also told my Urologist I needed to see him. My Urologist said nothing except he wanted me go see one of his friends.

I’m truly disgusted with it all. The misdiagnosis, Medicare, my father’s treatment by the insurance company and Medicare. It’s enough to make you give up. Maybe that’s what they want so they don’t have to pay. Make everything as difficult as possible so you don’t bother.

They didn’t count on me. It might take me longer to read and understand everything but I will find a way for my father to regain some of his dignity back. I don’t usually fight for myself, but for my family I will fight with all I have.

Where Has The Compassion In Medicine Gone?

On August 14th my father dropped me off at the hospital for my biopsy. It was outpatient surgery. My sister was supposed to come as soon as she could. My dad couldn’t stay because he had dialysis. I was scared, nervous, and in pain. I had stents put in previously to keep the ureters open so my kidneys wouldn’t fail again. The Urologist was going to biopsy the ureters and change the stents. I’m not good with anesthesia. I was quietly waiting for things to start.

The entire team that would be in the room came over to talk to me. They had just given me a mild sedative. The Urologist is making jokes at my expense. He says to everyone “This one is trouble! The demands she makes! WOW! She is demanding!” At this point he does a little hop. The head of Anesthesia says “She won’t be doing that in my hospital!” The entire time I’m lying there wanting to defend myself but can’t. I found myself unable to speak. The Urologist made me look like a “problem” patient before they even started. I was angry and confused. I wanted to tell at him. I wanted to tell him “Demanding? Your lucky I’m not 250 pounds and a drunk anymore because I’d shove my size 8 1/2 shoe up your ass” but I just stayed quiet.

They wound up taking biopsies from my bladder and kidney as well. The Urologist called my sister and told her he thought I would still need another biopsy where they do a coring of the ureter. So I’ll have to go under again. I had to be intubated which I’m not fond of and they never mentioned. I cried coming out of anesthesia. No one cares and my sister hadn’t shown up. I had seen my mother while under and didn’t want to come back. A nurse had blown a vein without my knowing it. The doctor didn’t talk to me just my sister. She showed up a half hour late to pick me up then yelled at me for being upset.

Why don’t the doctors take the time to read my chart? To see that I am Bipolar and have Conversion Disorder. And also see that I watched my mom die in that same hospital. Why don’t they know the mind and the body are connected? Why would they make jokes knowing I am scared and vulnerable? Telling them the last time to just leave under and don’t bring me back should have clued them in. My sister? She is who she is. That isn’t going to change. I’m alone in this and I better get used to it.

Whole Person/Patient Care

I realize I’m like a dog with a bone at times. When something is bothering me and I feel no one is taking me seriously or listening I get worse. I am “shushed” by my family or simply told to shut up. If they heard me out the first time and maybe said something like “I know that must of hurt you but I’m on your side” or anything like that maybe I wouldn’t still be bothered by the entire mess. Instead I got ” Come on! You’re blowing everything out of proportion!”. Or maybe I have a problem with short men because I said the Dr. had a Napoleon Complex. Not true by the way.

This brings me to the point of Whole Person/Patient Care. It’s done in other countries and in the U.S it’s mostly done in Holistic Medicine and Psychological/Psychiatric Care Centers. It is not done in mainstream medical practices.

When I go to the Urologist he/she only cares about that part of me. Same with the Cardiologist or Gynecologist. This does not help in my case. In fact it does me more harm than good.

If the Urologist had taken time to look in my file and see that I am Bipolar with Conversion Disorder and I also have Celiac Disease things might have went smoother. I might not have been on the ground beside my car crying after the appointment.

He didn’t care about what I had to say. He just wanted to come in, tell me what was going to happen and leave. I couldn’t do it. I could not have anything else to do with the Hospital I had been in. I literally watched my mother die there. The care I got was so bad my friend and her mother wanted to kidnap me out of there. I’ve already gone over the lack of care, comments made about being Bipolar and not taking me to the bathroom. Why would I want to have anything done there again? Absolutely not.

He wouldn’t listen. He just said if I wanted him and “the team” to “live” than that was what I had to do. I told him that he was the only person I had seen besides the nurses and his associate. I asked him if he had privileges at other hospitals why did I have to go to a place I didn’t like? He said he didn’t like it either but that’s where my “team” was. I was getting upset at this time. I said “WHAT TEAM??!!” it was only him. He was getting cockier and ruder by the minute. Again with the “if I want to live” thing. I wanted to ask him if he looked at my file at all. I’m Bipolar, sometimes I don’t know if I want to live or not. He wasn’t making things easier. My meds probably had not been metabolized correctly for quite some time. It’s why I was usually crying. If he had just taken the time to look at me as a person and not a bladder or ureter problem to solve what a difference it would have made.

At the end of the appointment I was crying and begging this person to help me and not hate me. PATHETIC. I think about it now and I’m so embarrassed that I would give anyone that kind of power. There are other doctors but at the time I was scared. I had been told by several doctors that whatever is going on is serious so I panicked. It didn’t give him the right to bully me into doing what he wanted. He was smiling when I left. I was trying not to hiccup from holding back my emotions and tears. I shouldn’t let anyone get to me like that.

If your Doctor isn’t listening to your valid questions or requests, find another one. It’s the best advice I can give.

The Urologist wanted me to go to his Hematology/Oncology doctor. I have my own excellent, caring, understanding Hematology/Oncology doctor that I told him I would be using. Before he could say a word I said “He graduated with you and has an excellent reputation, he was just voted Top Doc in our State I’m sure you wouldn’t have problem with him.” He said nothing. How could he? The guy was in his graduating class and he knew him. The only time I felt in control.

In conclusion Whole Person/Patient Care is a must. The brain greatly effects the body and vice versa. You need to see a person as a complete package not just one part. It will never work if our Healthcare System continues this way. I’m hopeful things will change. There are good doctors out there you just have to find them and see if they take your insurance. lol Sorry that’s whole different problem.